Thursday, July 26, 2012

I have decided Laura and I have become defacto Ambassadors to Purgatory. We keep meeting parents with kids just diagnosed with “something”. When we find them, we lift our wings and pull them in close to give them a crash course in how to live in the awful middle space between potential disaster and normal daily life.

“This is called an IEP. Your kid needs one. If someone tries to fight you on this, here are the ninja moves you will used to take them down”.

“Here is the language you will need to use to let X, Y and Z institution know that you mean business. If you use these words, they will know they better not fuck with you. ”

“Here are the proper tools (blender, adaptive stroller, etc) you will need when heading out for this territory”.

“Don’t ever turn down any help offered. Ever. That includes this advice”.

I want a shiny badge. Or a sash. Or maybe our own punk rock band. It’s kind of the perfect name, right? “Introducing Ambassadors to Purgatory! Ahhhhhhhhhhhhhhhhhhhh!!!!!!!!” There could be lots of screaming and throwing things and jumping up and down. It’s what I often feel like doing. Might as well get a stage for it.

Wherever we go, we find parents with kids that have just been diagnosed with some “issue”. Sometimes we can spot them a mile away and make our way over to them, sometimes they know about us and awkwardly hover until they figure out how to “come out” and sometimes we just stumble upon them in the line at the post office.

We’ve both gotten our 20 minute "here's how you're going to figure out how to live with this awful reality" pep talk down pat. Mine usually includes a) find a listserv for parents with kids who have your kid’s issue, b) don’t go searching on the internet, c) take any help offered to you, d) if you have a partner, make a regular date night mandatory, e) the address of our blog, f) connecting them to any other people we know who have this issue, g) reassurance that yes, it could be worse (parents will often say that), but also, whatever situation you are in SUCKS and it’s okay to be really, really pissed about it. This doesn’t have to be pretty.

Sometimes, though,I don’t feel like a glamorous ambassador with a pressed suit and an attache. Sometimes I feel like a grizzly old mountain man with half his face eaten off by a bear, warning people about bear attacks. Every once in a while, I have to check myself to not give too many gory details about how hard it can get, about what it actually feels like to have the flesh ripped off your body or wonder if you’re going to make it. I scan for the tell-tale glaze in their eyes or the shortness of breath or the pale face that tells me I’ve skipped to the Advanced Placement Survival Course when we’re still on introductions.

Then I will say cheerily, “It’s such a mix, you know! I have met some of the most amazing people and just been broken wide open by this whole thing in the best possible way”. Often, I really want to say, “Wow, you guys are totally screwed and it sounds like you best get into therapy ASAP cuz this is going to be a shit-show of epic proportions”. Still fine tuning the level of detail given to the newbies. So far no one has passed out or run away screaming. Yet.

Obviously Laura and I are both “helpers”. She’s a social worker, I work in public health. It’s just part of who we are. We both seek out people who look like they could use a little extra something, hunt around for whatever we have that might be useful, get close to people we just met because…well…they’re human and we’re human and I think humans are meant to connect to each other.

Most of the time I LOVE this quality about both of us. How could we pass up an opportunity to give even a modicum of support to other parents if we have something to spare? Connecting to someone in crisis, providing much needed information, support and resource, listening. I love it. It helps me feel like there is some purpose for what we have been through.

There is a cost for all these connections though. We carry the stories of all these people we are connected to and all the tragedies they face, in banged up little suitcases in our hearts. Sometimes I find myself thinking about the parents 3000 miles away who have lost a kid, or the family in the hospital in Spain or what the future might look like for the kid with the degenerative disease that is picking up steam. It’s like I have a whole teeming city in my brain and heart while most folks have a tight little village.

Lucky for me I’m a city girl. When people disparage Oakland, citing crime and Occupy Oakland and conflict, I just say, “that’s the price I’m willing to pay to live in an interesting, diverse, vibrant, urban area. It’s the price of admission to an amazing place”.

When someone says to me, “How can you spend so much time listening to other people’s stories and getting so involved”, I think I will now say, “If that’s the price of admission to be connected to other human beings in the best way I know how, to share what I’ve been given, to be an Ambassador, it’s a price I’m willing to pay.”

I think we are all Ambassadors to different things in our lives. Figure out what yours is and go help someone. Maybe it’s bike repair. Maybe it’s information about pregnancy and childbirth. Maybe it’s personal finance. Maybe it’s making things look pretty. Ours happens to be kind of gnarly, and so be it.

I am pretty sure a big part of why we are here on this planet is to help each other in whatever ways we can.

About Us

Team Shimmy was started the day our baby, Simon (aka Shimmy), became suddenly ill (8/1/08) with a rare heart condition called Cardiomyopathy. That day, friends and family rallied around us to form Team Shimmy. This team, which has grown to include new friends and strangers from all corners of the world, has sustained us with love, food, kind words and listening ears.
We spent 4 tumultuous months in the ICU at Children's Hospital Oakland. Simon has been steadily improving since that day. He was fed through a tube in his belly (a Mic-key) until December 2013, was diagnosed on the autism spectrum, receives various types of therapies and is still on meds. Oh, and he's the happiest, most engaging kid we've ever seen. Jaime (Mama) works in public health and Laura (Mommy), a former school social worker, stays home to take care of Simon (and to take him to his MANY appointments). To see a 10-min documentary about our family, go to www.youtube.com/watch?v=uGh8dFp2oqk.
This blog is a chronicle of our experience thriving in the middle of a nightmare. You'll laugh a lot more than you expect. Promise.
Contact us at lafitch@gmail.com or jaimejenett@gmail.com